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Twenty years and pressing on

I first got involved with the charity in November 1998, training to be a volunteer with my first family after receiving the newsletters for a number of years and having to wait until I was old enough to volunteer!! My first family were Irish with 2 primary age children, and a very enthusiastic dog that I found a little overwhelming, on the days we stayed at home. Their mother had died a year earlier, and within a year of my visits their Father sadly died as well. The children were not aware of their parents HIV status, and I can remember Dad speaking of his concern that his daughter would not be able to keep the information to themselves and his fear due to the stigma around HIV if the information got out.

To tell or not to tell children and other family members remains a dilemma for many parents. Fearful of introducing fear and anxiety for the children and frightened of the reaction of wider friends or family holds many back. Fear of discrimination, judgement or rejection, and information being gossiped to others, causes many to remain isolated and without the support needed. The stigma around HIV and the fear it causes is the area I have seen littlest change in my 20 years journeying with people. Even this morning sitting with a newly referred parent who really wants and needs the support, but so anxious about someone making the link to her through her children, that she is not sure she can take the risk and allow the children to come on outings.

I joined the team full time in November 1999 as a family worker, working with 8 families a week on visits, a year of relationship building, and fun amidst the challenges. Picking children up from school, helping with school work, baking, making, playing lots of games, and exploring local parks. Clocking sometimes 5 hours of travel a day to far flung corners of London! Tragically seeing more deaths in those first 2 years, and supporting children through bereavement and learning about their own HIV diagnosis.

This is the area I have seen most improvement and breakthrough over 20 years. Improvement of treatments available has improved quality of life and life expectancy can be normal for those with a prompt diagnosis and accessing treatment. Testing in pregnancy for all women, has resulted in the birth rate of babies born with HIV, from a 1 in 4 chance to a 0.02 chance in the UK. Accordingly the number of HIV positive children on our books has fallen from 20% to 0.05%, such fantastic progress. However, we continue to see an average of 1 death a year, and a significant proportion of our parents are impacted by ill-health, complications or disabilities caused by the HIV virus.

In 2000 I moved to the role of Home Care Coordinator, meeting the new families referred to do Home assessments, supporting with pastoral and advocacy needs at crisis points, and introducing volunteers to families for support. I became a proficient London transport traveller, and in the days before TFL journey planner, an expert at plotting bus routes and finding homes in ever new areas of London! I have had the privilege of being in the homes of more than 250 families, and hearing so many personal stories of pain and resilience. Listening to parents who have experienced much trauma around circumstances that led to an HIV diagnosis, hurt and rejection due to stigma, bereavement of a family member, and the ongoing struggle of parenting frequently alone, with ill-health, disability, poverty, and lack of certainty around immigration and suitable housing.

I am in awe of the resilience our families show. I love watching our children grow up and go on to succeed as adults, knowing the back story of all they have overcome. Our services and support being a small but not insignificant contribution to strengthening that resilience.

In 2004 I moved to East London to set up a branch of our work, Alongside You, to provide better access to support through local volunteers. It’s been a great privilege to see the work grow and to have trained and worked with more than 160 amazing volunteers in this time.

While 20 years on, the broader picture of HIV improves, the individual family stories and circumstances frequently remain as painful and challenging as ever. Frequently isolated, and hidden from view, it is for these individual children and families, that we press on to use the time, energy, and resources (limited as they are) to get alongside and build relationships that increase well being and bring hope.

So four hundred plus outings later and seeing some children from birth to 18 years, it remains a joy to have just completed Christmas party number twenty!